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Formative Research on Perceptions of Biobanking: What Community Members Think

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Abstract

Preparing healthy community members with timely communications prior to engaging them in a request to donate biospecimens promises to improve the experience of biobanking participation. To this end, a qualitative study was conducted to assess community member knowledge, attitudes, beliefs, and informational needs about cancer-related biospecimen collection in a large metropolitan area in southwest Florida. The study utilized purposive sampling techniques to recruit a total of 95 participants to participate in 12 focus groups, segmented by race/ethnicity and language preference (mixed race, African American only, and Spanish speaking) and age (18–29, 30–54, and 55 and older). Focus group interviews were analyzed using content analysis to identify emergent themes. Overall, participants in the 30 years and older groups were favorable toward participating in biobanking if their concerns were addressed, such as confidentiality and consent issues, in contrast to participants aged 18–29 who were more skeptical. For all participants, the desire to participate in research that seeks new cancer treatments outweighed mistrust. Moreover, many cited the potential scientific benefit for future generations as a primary motivator. Finally, in some groups a therapeutic misconception was expressed, where participants expressed a willingness to forego confidentiality of their health status in exchange for therapeutic benefit. This study contributes to the literature on community perceptions of the benefits and barriers of biobanking and adds to the development of meaningful education communication priming tools to advance understandings about biobanking.

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Financial disclosure

The project described was supported by grant number U01 CA114627-05S2 from the Center to Reduce Cancer Health Disparities at the National Cancer Institute. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NCI.

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Authors and Affiliations

  1. Jiann-Ping Hsu College of Public Health, Georgia Southern University, PO Box 8015, Statesboro, GA, 30460, USA

    John S. Luque

  2. Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, USA

    Gwendolyn P. Quinn, Francisco A. Montel-Ishino, Mariana Arevalo, Shalanda A. Bynum, Shalewa Noel-Thomas, Clement K. Gwede & Cathy D. Meade

  3. Center for Evidence-Based Medicine and Health Outcomes Research, University of South Florida, Tampa, FL, USA

    Kristen J. Wells

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  1. John S. Luque
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  2. Gwendolyn P. Quinn
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  3. Francisco A. Montel-Ishino
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  4. Mariana Arevalo
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  5. Shalanda A. Bynum
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  9. Cathy D. Meade
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Tampa Bay Community Cancer Network Partners

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Correspondence to John S. Luque.

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Luque, J.S., Quinn, G.P., Montel-Ishino, F.A. et al. Formative Research on Perceptions of Biobanking: What Community Members Think. J Canc Educ 27, 91–99 (2012). https://doi.org/10.1007/s13187-011-0275-2

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  • DOI: https://doi.org/10.1007/s13187-011-0275-2

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